West County: Jessup boy struggles with lung disease; his family struggles with bills

By Atalie Day Brown, Correspondent

Mason Roberts, 11, of Jessup, right, enjoys a day outside with his mother, Elaine Roberts and sister, Madison, 12, at Savage Mill. Due to a rare lung disease, Mason will soon be unable to play outside when the weather gets cold.

Mason Roberts, 11, of Jessup, right, enjoys a day outside with his mother, Elaine Roberts and sister, Madison, 12, at Savage Mill. Due to a rare lung disease, Mason will soon be unable to play outside when the weather gets cold. (By Atalie Day Brown, Correspondent)

Mason Roberts has never been healthy.

The 11-year-old Jessup boy lives with primary ciliary dyskinesia, a lung disease for which there is no known cure.

He is selective about revealing his condition to friends or classmates. "I try to keep it a secret," he said. Because he often does not appear sick, other children do not understand why he has a feeding tube, or why he sometimes uses a wheelchair to get around.

Mason also has had to deal with students bullying him for wearing a medical mask that protects him from airborne illnesses. "Sadly," he confessed, "I'm used to it."

His mother, Elaine Roberts, had a normal, healthy pregnancy with her son, but that all changed moments after his birth. Mason was born with meningitis and pneumonia, "He literally died three times," she said.

Last year, doctors from the National Institute of Health finally diagnosed him with PCD, a lung disorder characterized by the malfunction of tiny, hair-like structures called cilia, whose job is to clear mucus from inside the lungs.

Living with PCD has been an ongoing struggle for the Roberts family. Mason can be fine one hour, and sick the next; they are always on alert for symptoms that will lead to yet another long drive to Children's Medical Center in D.C. "(Children's) is kind of my second home," Mason said.

He has suffered 52 bouts of pneumonia, countless hospital stays, and a surgery to remove a portion of his right lung. "My chest hurts all the time, 24/7," he said.

Despite his medical ailments, Mason has survived with a positive attitude intact. For Mason, even a trip to the hospital can be positive, because it's an opportunity to visit with his hospital family. "I look at every bright side," he said with a smile.

"He's so strong," said his mother. "I admire him for how strong he is."

The Roberts family struggles to maintain financial stability because of their hospital debts. They consistently have over $100,000 in hospital bills lingering over them. Elaine created a website which explains his condition, blogs family experiences and offers a way for people to make donations that help the family pay for Mason's expensive treatments.

The Roberts live in a two-bedroom home. David sleeps on the living room couch so that his son can sleep in a real bed. Their low credit score has been caused by overwhelming hospital bills, not by unpaid rent or utilities, said Elaine. Plus, the family receives no government assistance and has to pay for some medical supplies out-of-pocket. However, the family hopes to one day be able to buy a house that better suits their needs.

To keep up with the bills, Mason's father David Roberts, works three jobs, seven days a week and sometimes up to 20 hours per day, just to make ends meet. Both children admit that they sometimes miss their dad because he spends so much time working to support their family.

This summer, the Mason, his 12-year-old sister Madison and his parents did get to go on a much-needed family vacation.

The family won a free, weeklong cruise to Bermuda provided by CruiseOne. Carol Novack, a family friend who works for the cruise company, entered the family into a customer appreciation contest. The vacation started with a limo ride to NYC, it also included swimming with dolphins, fishing, zip lining, exploring the island, swimming and spending lots of time reconnecting with his family. "We did a lot," Mason recalled with a wide smile.

Now that the weather is getting colder, Mason has to stay inside and will be tutored from home. This is especially heartbreaking because Mason said that he loves school, especially math class. The impending cold weather makes breathing even more difficult for him. If his family could afford to send him to Florida during parts of the winter, they would.

Mason's illness has not kept him from earning his brown belt in karate, an accomplishment that he is very proud of. Thanks to the Tompkins Karate Association, Mason has been able to postpone tests when he is hospitalized. "I love my instructors," he said of TKA.

When he grows up, he wants to be a doctor or a hospital volunteer who helps people. He also wants to teach sick patients that they are not alone, and that he fully understands what they are going through. "Hopefully by the time I'm able to be a doctor, there will be a cure (for PCD)," he said.

Faith is important to Mason and his family. They regularly attend Emmanuel United Methodist Church in Laurel and find strength in their Christian faith. "I love my church family," Mason said.

The holiday season is nearing and Mason has a short wish list for Christmas that includes typical gifts like new video games for his Xbox 360. However, he also has one atypical wish on his list: To find a friend who is living with a similar illness.

"That's what I want for Christmas," he said. "It's a lonely world living with a rare disease,"

Come Just As You Are Bible Fellowship Crusade Ministry, 1210 Severn Station Road, Severn will host a community outdoor worship experience at 11 a.m. Sunday.

The Rev. Gertrude Stevens, pastor of CJAYA, and the Rev. Dollie Kreger, from Severn Full Gospel Pentecostal Church, will preach a dual sermon.

Their church choirs also will sing together as their congregations unite in worship.

For details, call the church at 410-551-5890.

Garden Club Meeting

The Meade Area Garden Club meet at 10 a.m. on Friday at the Jessup Community Center, 2920 Jessup Road.

The club will be welcoming back Sarah von Pollaro as their speaker for this holiday program. Von Pollaro is the founder of Urban Petals Floral Design which creates one of a kind floral designs for events, then donates them to nonprofit organizations the following day. Her designs have adorned the Kennedy Center, multiple embassies, and the Macy's Flower Show. She is also honored to help with special events at the White House.

All are welcome to attend and no reservations are necessary.

Refreshments will be served. The club also will hold its annual holiday bake sale at the meeting.

A health fair sponsored by the Commission on the Status and Role of Women, Take Two and Healthy Coalition Ministries will be held at St. Mark United Methodist Church, 1440 Dorsey Road, Hanover, from noon to 3:30 p.m. Nov. 22.

There will be health information and materials, including tips on eating healthy.

For details, call Rosalind Thompson at 410-884-4177 or 301-814-6102.

To submit news items for Severn, Hanover, Jessup and Harmans, contact Atalie Day Brown at adbrownmdgazette@gmail.com or 301-697-1307.